Tiny Red spots in rash accompanied by swollen eye... - LUPUS UK

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Tiny Red spots in rash accompanied by swollen eyes and a scratchy sensation

Penelope-Pipin profile image

Has anyone experience this ?

My rash has progressively gotten worse and a new development seems to be super tiny red dots to the rash now ? Even when I’m not flaring, both my eyes are constantly swollen and I’ve been experiencing pain in my eyes more so the left (that’s where the swelling is most).

I have been referred to a rheumatologist and dermatologist my GP says he can’t rule out Lupus even though my bloods were negative. I have had a slight increase in Neutrophil levels.

Are these more lupus related symptoms? Anyone else expertise this during a flare ?

30 Replies

Hi.sorry cant help with the rash but your eyes could sjorgens. Are the dry as well ? Sjorgens affects moist membranes like the eyes and mouth.it can either be on its or secondary to lupus.i have it and my eyes itch ,burn and feel gritty and dry x

Sometimes they feel gritty but not all the time. It’s more the swelling and the rash is on my eyelids and when it flares it’s unbearable to touch. I’ve also noticed I have been getting styes

A gel eye mask helps soothe my eyes. x

Are you currently taking medication? It’s just that when I asked my dr about drug related allergies he said that it would be tiny red spots all over the body if your body reacts to medication so just sounded similar

Hey there. No I’m not on any medication just steroid cream. Could that be the cause ?

It could possibly be because it was oral steroid that he said may cause that reaction maybe have an experiment and monitor it for a few days?? X

Thank you will give it a try

Just wondering where your eye swelling is...cause my doctors have explained my eye swelling is called peri-orbital oedema: the soft tissues around the eye socket fill with some sort of body fluid, so much do that they droop into to corners of my eyes near the nose..interfering with my sight...it’s dreadful, and I only get this when my Lupus is flaring or under medicated. Hope that makes sense?

I do have sjogrens too, so that’s probably another underlying cause of this swelling. And before we got my lupus & sjogrens meds right, I also had a nasty rough, sort of bumpy reddish raised rash from under my eyebrows, deep into the crease below (but not actually on my eyelid)...hard to explain 🤷🏼‍♀️.

Before my eye clinic cornea chief figured out my sjogrens, & got me on immunosuppressant drops as well as the daytime drops & nightime gel I’d been on for several years, my eyes felt v gritty & sore, with a lot of redness etc.

Maybe something in that can help a bit

My blood is negative for all antibodies, but I do fulfill enough of the other official diagnostic criteria to qualify for lupus & sjogrens.

Hope your referral goes through to promptly, so your appts are soon as pos ❤️🍀❤️🍀 Coco

Hey Coco

Thank you so much for the info ! Uhm it’s such a weird feeling to explain I call it “my Granny eyelids” because my eyelids swell so much they sag ! And the rash that my GP says looks like a malar rash has spread to the top of my eyelids but nothing around my eyebrows.

Also I have a weird discolouration on my left temple and I keep getting pain in my left eye like the start of a migraine.

So you say your bloods were all negative do you mind me asking what your symptoms where that you still got diagnosed ?

I’m on a waiting list to see the rheumatologist and the dermatologist because my GP says he can’t rule out Lupus even though my bloods are negative.

🤦🏼‍♀️ Oh gosh: i have so many lupus-relevant multisystem symptoms, i could go on & on. Took my rheumatologist 2 hours to examine me physically & take details of my medical history. But the main thing is, i fulfilled the official diagnostic criteria. Have you been to the Lupus UK website section on diagnostic criteria? In case not, i’ll include the link, below.. The reason i’m seronegative is that i have a primary immunodeficiency disease which makes me unable to create antibodies, but my complements are both below normal range & i have lymphopenia. So your GP is right not to rule out lupus...a lot of GPs are not well enough informed to realise this. Hope you’ll let us know how you get on ❤️🍀

lupusuk.org.uk/diagnosis/

Thank you so much ! I can’t believe how much info I’m receiving on this forum it’s helping so much. What I’ve started doing is writing daily symptoms down so when o do go to the rheumatologist Im hoping to be able to give them a full picture

👍 THAT’S THE WAY TO DO THIS 🤗...you’re probably doing this already, but for what it’s worth: when you write symptoms down, consider noting when each type of symptom actually first began to affect you & whether they’ve gotten more severe with time - try to use a 1/10-10/10 severity notation too.

In this the swelling/oedema is not severe, just around 5/10 in severity

Droopy soft tissues around my eyes, like this 20+ years (since my early 40s)
Barnclown profile image
Barnclown in reply to Barnclown

So, when my lupus & sjogrens are flaring, the red hatched area gets the rash I’ve described & the blue hatched area fills up with fluid so severely 10/10 that the drooping tissues interfere with my sight. Hope this makes sense, but this sort of manifestation is called peri-orbital oedema - which can be caused by all sorts of other probs, so my advice to you is: help your doctors by taking a pic of your eye & have a go at marking it up to indicate your rash & swelling...am sure you’ll mark your pic better than I have mine 😉 🍀❤️

Thank you so much it helps a lot !! I’ll see if I can show you a pic of my eye

👍😄❤️🍀❤️🍀

Not sure if you can see but it’s swollen on the top of my lid with the rash on the top of the lis I’ve noticed the top lid swells more and around my cheekbones

And then you can see the rash stems to my nose and cheeks

GRRRREAT! I can see what you’re describing....& that your rash doesn’t extend beyond the nasolabial folds, which is a characteristic that differentiates lupus malar rash...

Barnclown profile image
Barnclown in reply to Barnclown

The black outline shows one of her 2 nasolabial folds (photo taken from wiki’s nasolabial fold page)

Barnclown profile image
Barnclown in reply to Barnclown

en.m.wikipedia.org/wiki/Nas...

Good old Wiki also explains that malar rash can be caused by several different things:

en.m.wikipedia.org/wiki/Mal...

When my GP saw my rash the very first time he said it was a malar rash and I think because even though the rash has progressed it has still stayed distinctive to the malar rash shape. I think he’s also referring me to rheumatologist because my mom has autoimmune.

Makes sense! So so many gps never even see a Lupus patient. Am very glad you & your mum are with such a well informed gp!

Yes he is a good GP I was with another GP last year but he didn’t seem to listen to me I started off with migraines (I never get migraines or headaches the only time I’ve had them is due to ear infections or wisdom teeth being removed ) anyway the first GP was adamant that my migraines and rash weren’t related. So I switched GPS. Also I’ve noticed that I don’t get migraines anymore since the rash has appeared is this a usual thing ?

🤷🏼‍♀️ in my experience with a lifetime of infant onset lupus (I’m 67😉) every case is unique. I’ve managed chronic migraine all my life too, and for sure my rash & migraine can be together, or not together...I’m like you: I study my symptom patterns all the time, even after 67 years am still doing this: what triggers symptoms, what damps them down & what doesn’t etc etc...for sure this effort helps my medics a lot to help me as much as poss

Hi Penelope - bear in mind that Dermatomyositis can also cause a Malar rash and peri orbital swelling and can be quite difficult to distinguish from Lupus in the early stages.

Thank you l’ll look them up

In the interim, whilst you are waiting, you could attend - not sure where you are located - an A&E eye hospital. For instance, in London there is Western Eye, Moorefield and St Thomas's.

At least, they could examine your eye and carry out some baseline tests. The reason being, I had something somewhat similar but not exact and very quickly, it started to affect my eyesight. I ran (not literally) to Western Eye and they were superb. To cut a long story short, I was eventually diagnosed with Lupus and a basket full of other AI-related issues.

So, I would highly recommend attending an eye A&E whilst waiting for your referrals.

Good luck

Thank you so much I’ve been meaning to go anyway so maybe this is a good excuse

How long does a Malar Rash last ?

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